The Boy with Half a Brain

Zionsville’s Jeff and Tiernae Buttars surrendered their son William to the most radical procedure in neurosurgery. The grim choice to remove a portion of his brain left everyone changed.

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“The Boy with Half a Brain” was published in our August 2014 issue and is being featured as a part of our 12 Days of Longform homepage takeover.

What William Butters experienced and overcame is phenomenal, but I was drawn to telling William’s story through the eyes of his parents. They were faced with such a horrible choice, but throughout the decision-making process—and aftermath—Tiernae and Jeff Butters really ascended to what is possible and best in all of us. I think that’s the appeal for readers, most of whom can empathize with being in a bad spot and then playing What Would I Do In This Situation? throughout the narrative. –Michael Rubino, author


 

Inhale. Exhale. Jeff Buttars looked around the tiny pre-surgical room and reminded himself to keep breathing. As his chest rose and fell, so did his spirits. His wife, Tiernae, appeared calm, confirmation that this decision was the right one. His infant son, William, stirred and beamed, a soft expression that landed hard. I’m leading a lamb to slaughter, Jeff thought. Inhale. Exhale. The sound of his measured breaths drowned out the room’s ambient beeping and buzzing but could not hush the ripple of doubt.

Jeff gathered the baby in his arms, and the family made its way toward a set of swinging metal operating-room doors. On the ground a few feet in front of the doors, a swath of yellow tape marked the threshold to the unknown. In the days leading up to William’s surgery, the choice the yellow line represented had seemed clear, but as they walked forward, it now appeared blurred.

Are you praying hard enough? Jeff’s brother had asked, meaning well. Are you listening for the answer? The prayers—are they the right ones? As though there existed a combination Jeff had not yet considered. A financial professional who worked in the home-loan sector, Jeff made it his business to eyeball numbers, size-up odds, and foresee outcomes. Probability begat prophecy in his world. Now little of that mattered. The decision he was making with his wife affected not a stranger but their baby, and the potential outcomes (slow death, fast passing, a medical miracle), he believed, were in the hands of God.

William looked fine. Pink. Chubby. Cute. But for his mother, the outward appearance of perfection only made explaining his affliction more difficult. Some family members and friends couldn’t see what Tiernae could, didn’t know what she knew: William’s life was in danger. They could not peer inside the boy’s head, nor had they examined the brain scans showing the right hemisphere in conflict with the left: dark instead of light gray, misshapen instead of symmetrical, smooth surface instead of rippled. He looks fine, they would say. Are you sure?

By the time William was days away from his first birthday, the husband and wife had begun to make peace with a horrible conclusion: In order to save their baby’s life, they had to risk it.

Tiernae was. William’s brain had developed abnormally in utero. After he was born on July 12, 2005, he weathered as many as 80 seizures and spasms per day, storms that eventually passed after a few moments but stole a fraction of the boy’s ability to function and a sliver of his life expectancy each time. She was losing William, bit by bit, fit by fit.

At first the spells went unnoticed, but once William was diagnosed with cortical dysplasia, Tiernae could hardly keep an accurate count in her journal. She filled binders with observations and information, even as she struggled not to blame herself. What did I do wrong?

During an early stage in the battle with the neural attacks, Jeff would tiptoe into the boy’s room at night, stand vigil over the crib with a flashlight, and count the outbursts.

Over time, there in the dark and without realizing it, he developed a peculiar tic of his own. The father tensed and flinched in sympathy whenever the son convulsed. Over the course of William’s first year, medications failed to work, and the spasms continued. Milestones—absent firsts like rolling over and crawling—became millstones. This thing is winning, Jeff thought. By the time William was days away from his first birthday, the husband and wife had begun to make peace with a horrible conclusion: In order to save their baby’s life, they had to risk it.

Doctors, in examining-room asides, confided: You are the bravest people I know. The couple, who then lived in the Seattle area, didn’t feel that way—at least not on that day in the hospital, as they stared ahead at the swinging doors and yellow tape. Between themselves, the two didn’t speak a word, but they shared an impulse: Run.

Independent of one another, the mother and father had felt that urge on the flight to the hospital in Los Angeles from Utah, where they had left their three older children with grandparents. Tiernae wanted to grab William and flee before they even checked their bags. Jeff fought the temptation as William rested between him and Tiernae, smiling and cooing.

The dark areas of this scan reveal the areas where doctors removed and disconnected William's brain tissue.
The dark areas of this scan reveal the areas where doctors removed and disconnected William’s brain tissue.

For the trip, Tiernae had packed a baby blanket, one crocheted by a cousin. She reasoned the item would bring her as much comfort as it would William. The deep-blue throw was bordered in red and dotted with images of astronauts and stars. The keepsake reminded her of happier times when she was a child and her grandmother taught her and that cousin to sew.

Now the blanket was tucked away in a hotel room near the hospital, and just beyond the yellow tape and the doors, a medical team prepared instruments. A #15 surgical blade. A high-speed drill. Retractors. Fish hooks.

These were the tools a neurosurgeon would need to disconnect half of the baby’s brain.

The doors opened. One of the doctors greeted Tiernae and Jeff. “I have a 2-year-old boy,” the physician whispered. “I’ll take care of him like my own son.” William and the doctor crossed the yellow line. They disappeared. Then the doors closed.

A thought menaced Tiernae: I’ve just sentenced my child to die.

 

Are his lips blue?

Jeff wondered, but the rest of those gathered in the delivery room for William’s arrival were charmed by the infant’s rosiness, a blush Tiernae had not seen in the births of her three older children. Pink, a healthy one, the nurses concurred. Uncommonly pink.

Yes, but, around the mouth, the lips—is that kind of bruising ordinary? Jeff asked one of the nurses. She didn’t see anything. The interaction, like the blue Jeff thought he saw, faded, giving way to the excitement of a new life. Eight pounds, 14 ounces. The Buttarses felt blessed.

“What have you been waiting for?” asked one doctor.

This trip to the hospital had begun in typical fashion, just like the arrivals of the three older children—a first-grader, a preschooler, and a 3-year-old. Last-minute fumbling. An early-morning call to the neighbors for help. And a car seat—they couldn’t leave the hospital without one of those.

Even though this had been Tiernae’s fourth pregnancy, she was particularly mindful of how she felt and what she ate. Her third child, Stuart, had been born with a heart murmur that soon healed naturally. The scare left an impression, but this one, William, he was pink.

The next day, as Tiernae and William were being discharged, Jeff left to fetch the car seat. When he returned, William was gone. In Jeff’s momentary absence, the baby had turned blue.

Concerned but not alarmed, doctors reassured the couple and admitted William to the intensive-care unit. They wanted to hold the baby for observation and testing over the next eight days.

Jeff headed back toward the parking lot, walking through the hospital hallway alone. He knew no one was staring, but he felt- self-conscious, struck by the unnatural silhouette he cast. Who walks out of a hospital with a baby car seat and no baby?

 

When the hospital finally discharged William later that July, doctors armed Tiernae and Jeff with a prescription for Zonegran, a medication that controls seizures, and instructions: Don’t worry.

Early investigation revealed fits—possibly epileptic—were causing William to stop breathing. Doctors estimated William seized every 12 seconds. Later, an EEG, a test that measures the electrical activity of the brain, revealed that rogue surges—which started in the right hemisphere of his brain and traveled to the left half—were causing the convulsions. Once the dosage of medication was calibrated, doctors felt the condition could be managed.

The chances of total control or outright eliminations of the seizures stood at 50 percent. Jeff could deal with those odds.

Tiernae, too, believed. When she was a child, her sister suffered seizures after a bicycle accident, and afterward Tiernae watched how her mother made dealing with the condition routine. The stay-at-home mom jumped into her new role as William’s nurse practitioner and focused on the day-to-day details of his care—administering as many as five types of medications at intervals and working in physical-therapy sessions between feedings, naps, and diaper changes. Jeff, whose department was closing at work, knew he would be losing his job in the coming months and took charge of the three older children. Together, they shared Jeff’s attitude that if you worked hard enough at something and said your prayers, good things would follow.

Tiernae became a familiar face at the hospital—she was such a frequent visitor that she was given an “express pass”—and compiled charts for medicating William. When seizures occurred, she documented their intensity, duration, and time of arrival. She took the additional step to video-record the fits. Though Tiernae felt as though they were outflanking the seizures with planning and precision, something haunted her: She never saw lucidity in her infant’s eyes. They were dull, cloudy.

William’s condition stemmed from cortical dysplasia, one of the most common causes of epilepsy.

In September, three months after William’s birth, a specialist reviewed the video footage the couple had collected. He determined the baby’s seizures were being accompanied by more violent episodes called infantile spasms, where, similar to a sit-up, the torso thrusts toward the body’s midsection as the legs and arms stiffen.

The neurologist now said they had a 2 percent chance of controlling both the seizures and the spasms. We’ve lost, Jeff thought. Another option existed, a surgical one, but the idea seemed so radical and irrevocable.

Caught between 2 percent and an op-tion too extreme to fathom, the Buttarses plunged into the round-the-clock vigilance and care William required, including shots of the hormone ACTH to suppress his spasms. Tiernae planned the family’s day in advance by the hour, and, in some cases, in 30-minute increments. She worked on proper injection technique by guiding the needle of a syringe into an orange.

The shots came with side effects. The ACTH weakened William’s immune system, forcing the Buttarses to treat their house like a quarantine zone from November to January, and William, a captive. The younger children, Brooke and Stuart, shared their blankets with William. Alex, the oldest, best understood his baby brother had a grave medical condition. He told his parents he was praying for William.

When William underwent a nine-hour surgery to stem his round-the-clock seizures, his parents weren't sure how much of their son would survive.
When William underwent a nine-hour surgery to stem his round-the-clock seizures, his parents weren’t sure how much of their son would survive.

With their lives in a free fall, Tiernae and Jeff tried to exert control over what they could, including protecting their oldest three from the harsh reality of their brother’s condition. Tiernae might not be able to stop William’s seizures, but she allowed herself to enjoy building relationships with her other children. Getting out the house with them—if only for a few trips down the park slide—made her feel normal. William, however, continued to decline; he developed acid reflux from all of the medication and only seemed to find relief by thrusting himself backward in a bouncy chair, the motion mitigating his irritation. Over the holidays, Alex lent a hand, taking turns bouncing William in his tiny seat.

None of it was enough. In February, Jeff and Tiernae put William under observation and learned he had experienced more than 40 seizures and spasms—some lasting longer than a minute—in one 24-hour period. Left unchecked, the condition promised a stark future in which William would be unable to feed himself or even recognize his parents.

The Buttarses began to consider the awful alternative: a hemispherectomy.

 

The idea of cutting into their infant’s cranium to remove a portion of his brain initially seemed barbaric to Tiernae and Jeff. The practice of digging into the skull for medical purposes, however, dates back to prehistoric times. Some medical historians even believe brain surgery to be the earliest operation ever performed.

Friedrich Goltz, a German physiologist, performed the first known hemispherectomy on a dog in 1888 to prove one could remove large portions of either lobe without endangering an animal’s life. Walter Dandy, an American considered one of the founding fathers of neurosurgery, became the first to accomplish the procedure on a human in 1923. Dandy removed a brain tumor, but his patient later died of cancer. In 1938, Canadian Kenneth McKenzie became the first to eliminate seizures with the operation when he removed the right hemisphere of a 16-year-old girl.

William’s condition stemmed from cortical dysplasia, one of the most common causes of epilepsy. When the brain develops in utero, neurons from the center of the organ extend outward to the cerebral cortex, but William’s neurons had failed to spread properly, causing lesions and malformations on the right frontal and temporal lobes of his brain.

Personality, emotion, and higher-level mental functions (like problem-solving and conceptualization) reside in the frontal lobe, as does control of most voluntary muscles (the kind, for instance, used in running or throwing). The temporal lobe, located around the ear, processes auditory and some visual information and is also associated with memory.

Through tears, she caught sight of a church steeple and began singing a hymn, “Lead, Kindly Light.” A sense of calm washed over her.

Tiernae and Jeff investigated the procedure and solicited pitches from a handful of hospitals across the country. Some recommended either removing or disconnecting only a portion of William’s right frontal lobe, while others insisted on taking the entire hemisphere. Leaving even a portion of the lobe behind, some feared, might invite a reappearance of seizure activity. All agreed that a good portion of William’s temporal lobe needed to be uprooted.

Most wanted to hold off until William was at least a year old. Given his age (11 months) and weight (nearly 20 pounds), the surgery was considered high-risk. But neurosurgeons at UCLA advocated doing the hemispherectomy right away. “What have you been waiting for?” asked one doctor. The sooner they could get William into the operating room, they argued, the sooner the opportunity for neuroplasticity—the brain’s ability to compensate and adapt—to begin. Doctors told the Buttarses that the remaining portion of William’s brain would have the chance to take on the functions of its missing counterpart, but results varied. As an infant going through normal brain development, William might have a better chance to adapt than older patients.

The couple settled on UCLA and Dr. Gary W. Mathern, who had performed close to 200 hemispherectomies—though, like others, he had lost patients, including an 8-month-old. Mathern planned to disconnect the right frontal lobe by severing a bundle of nerves called the corpus callosum, keeping it from communicating with the rest of the brain and, hopefully, halting the spread of the disruptive electric impulses. The hemisphere would be left largely intact to preserve the shape of William’s head. He proposed taking out the entire right temporal lobe and explained that cerebrospinal fluid would fill the void.

The planned operation required a craniotomy, a maneuver to temporarily remove a portion of the skull and expose the brain, creating a window through which Mathern could work. Afterward, he and his team would return the bone and skin flap and, finally, staple it back into place. The surgery would last nine hours.

But there was a tradeoff. In exchange for a 60 percent chance to end the seizures, William would lose a portion of his vision, forfeit use of his left hand, and might never walk without some form of assistance. He’d always be labeled “special needs,” though the doctor promised that William would grow to develop a below-average IQ in the 70-to-80 range. (Untreated, he was headed for one 40 points lower.) And there remained a chance, however small, that William might not survive the procedure.

The Buttarses prayed and agonized over the decision, but by the time they met with Mathern, they had made up their minds.

 

Wrestling with the abstract concept of the surgery, however difficult, failed to prepare the couple for the sight of the metal operating-room doors swinging closed. Neither could speak. Thoughts, bad ones, looped.

Are you praying hard enough?

What did I do wrong? We’ve lost.

I’ve just sentenced my child to die.

Somehow the Buttarses dragged themselves to their hotel room.

Jeff walked family and friends through the surgical procedure on their blog. He slogged through a never-ending tide of phone calls from well-wishers. He paced.

Tiernae fell into bed, wrapped herself in a blanket, and stared out of the window. She wouldn’t move—couldn’t—for the next nine hours.

Her thoughts drifted to her other children—she was grateful for them. A day earlier, after Jeff prayed over the entire family, her first-grader, Alex, had said, “I just feel really, really sad for William.” Through tears, she caught sight of a church steeple and began singing a hymn, “Lead, Kindly Light.” A sense of calm washed over her. If William is supposed to pass on, it’s the will of the Lord, she thought. His body wasn’t perfect in this life, but it will be in the next.

Late in the afternoon, the phone rang again. This time, it was the hospital. William had survived the surgery. Jeff and Tiernae could see him in an hour.

At the hospital, a nurse wheeled William into the recovery room. Bandages masked his swollen face and head. A tube that dripped with blood protruded from the dressing. Yet he slept, eyes pressed shut.

Tiernae saw that the baby’s left hand—the lifeless one—rested in a splint. As regret pricked her heart, William opened his eyes, now bright and clear. A dull cloud no longer came between mother and son, and Tiernae felt as if she was seeing William for the first time, and he, her.

Jeff jerked—the old tic. He winced. He waited for a seizure.

No response. Nothing. For once, a beautiful nothing.

 

What can you do with half a brain?

That’s the question Dr. Gary Mathern poses to his audience at an independently organized TED event in Thousand Oaks, California, in March 2011, almost five years after he performed William’s surgery. Mathern’s presentation runs roughly 20 minutes, and William stars as one of the doctor’s success stories.

Before the surgery, doctors cautioned that the procedure might cost him the ability to walk. But eight years later, the fourth-grader not only runs—he shoots and scores too.
Before the surgery, doctors cautioned that the procedure might cost him the ability to walk. But eight years later, the fourth-grader not only runs—he shoots and scores, too.

Photo by Tony Valainis

Mathern shows a short video clip of William before the hemispherectomy as the infant endures a seizure, and then follows with a still of an EEG of the activity—a disturbing scrawl of looping squiggles. He explains that a seizure “hijacks” the brain, and that after such events, “your brain needs to re-scramble itself.” It’s like a computer rebooting, he says, but it can take anywhere from a few minutes to a few hours to recover. “Now imagine if you’re doing this 30 or 40 times a day.”

This type of infinity loop doesn’t give children a chance to develop normally, he says. When Mathern first met William, the baby could barely hold up his head on his own and wasn’t crawling or meeting other benchmarks of childhood development. Mathern cues another video—this one of William’s surgery, which he describes as “radical.”

And what can William do now? Mathern teases: “Through the miracle of digital photography and compulsive parents, you’re going to see four years of development over the span of a few minutes.”

Then Mathern plays a series of home videos, and the audience watches William grow up before their eyes. He smiles (it’s a little crooked). He crawls like a soldier going under barbed wire. He walks on his knees, and then, in another clip, on his feet. William negotiates stairs. Then he runs. Further into the future, he plays organized soccer. Now it’s the first day of school, and William waits for the bus. He’s wearing a light-blue oxford and a tiny navy tie.

“How old are you?” his mother says, asking questions she once feared the boy would never be able to answer.

“Five.”

“Is it the first day?”

“Yep.”

“Of what?”

“Of school.”

“Can I have a thumbs up?”

Onscreen William complies, and the hushed crowd gasps at the visual exclamation point. More videos show William counting, writing, and reading. It looks easy. But, of course, the process took years.

When he learned to walk, Tiernae used his brother Stuart as the demonstration model. She and Jeff taught William how to smile by making him practice in a mirror. Other milestones required professional assistance. The Buttarses moved to Indiana for Jeff’s new job two years ago, and William visits occupational and physical therapists here several times a week and receives therapy through the Zionsville Community Schools system, where he’ll be a 9-year-old fourth-grader this fall. William sees a neurologist and a rehab specialist at Riley Hospital for Children every few months and an orthopedist twice a year. And then there’s equine-assisted therapy, water therapy, and participation in occasional clinical studies. William still takes a host of medications, including treatments for ADHD, a condition common in those with brain injuries, but his seizures have never reappeared.

He’s done well in school, once scoring as high as 90 on an IQ test (over the years, the results have fluctuated). However, mentally, he tires easily, and a few years ago Tiernae realized she needed to dial back, especially with homework. A doctor explained it to her this way: Imagine if William started the school day with $5,000. He spends about $3,000 at school, and by the time he gets home he has little left in the bank. Through an individualized plan, William concentrates his efforts in the three academic areas Tiernae feels are essential: math, writing, and reading.

“Having a special-needs child is like dealing with the death of a child—the child you thought you were going to have.”

William excels in the latter, says Kara Seever, a special-education teacher at Pleasant View Elementary. Fully integrated into mainstream classes there, he always volunteers to read aloud—and does so with better inflection and more fluidity than most of his “normal” peers. He’s a popular child with a good sense of humor. Most of the other students don’t yet perceive that William is different until he tells them. “The kids are usually pretty amazed,” Seever says. “They’re like, ‘Wow, William, you can do so much with half of your brain.’” The teacher feels the same: “I never expected someone like him to do so much.”

Tiernae says if William puts his mind to something, he can normally accomplish it. Reading, for example, did not come easily—especially when teachers requested he track the words on the page with his finger, like his classmates. Following along in that manner requires mental dexterity, right and left brain working in concert. Yet, through repetition, William persevered thanks to the same type of effort that enabled him to master a video-game controller, usually a two-handed undertaking.

Eventually earning a high-school diploma seems within reach, and Tiernae and Jeff hope that one day William might even be able to take a college course or two. Though he’ll never be able to live on his own (concepts like money and time are problematic), his siblings say William can live with them when the time comes. Tiernae believes her youngest will have the basic skills to hold down a job, possibly something that involves repetition.

At this point, however, William plans bigger things—life as a “secret agent.” He thinks the career will be a good fit for his abilities: hiding and sneaking up on people. His parents have been content to keep the fantasy alive, but his brothers and sister haven’t. They’ve explained to him that being a secret agent might entail shooting a gun with both hands. William, though, is undeterred: “Well, I know that, guys, but I bet I can figure something out.” Although they occasionally give William a hard time, Tiernae says the older children remain aware the youngest sets an example. “We have a saying in our house,” she says. “We can do hard things. Buttarses do hard things.”

 

William pushes his face against a chain-link fence and squeezes his mouth between an opening.

Behind him, about 30 special-needs boys and girls dot a sun-filled baseball field in Zionsville. They play for the Avengers, a team in Little League’s Challenger Division, a category designed for children with physical and mental challenges. Everyone bats once per inning, all play seems to occur on a continuum, and no one loses.

The boy, wearing an emerald-green cap, attempts to capture his parents’ attention. “Mom, Mom, Mom.”

Tiernae and Jeff can hardly keep up with 9-year-old William.
Tiernae and Jeff can hardly keep up with 9-year-old William.

Photo by Tony Valainis

Like most boys his age, William enjoys baseball and swimming. His favorite colors are blue and green. He loves Fridays, pizza, and video games—but only certain ones. “My friend, his dad has a video game that’s so violent,” he says. “It’s so violent that my friend, he wet his pants. I’m not allowed to play violent video games.” He recently returned from a weeklong camp for special-needs kids, staying away from home for the first time in his life. William came back with a medal around his neck, a constellation of mosquito bites, and a good story: He swam the length of the camp’s large lake.

“Mom, Mom, MOM!”

Tiernae steps away from a conversation with another parent and approaches the fence. “Mom,” says William, swinging an imaginary baseball bat, “I got this.”

But for all of the amazing things William can do with only half of his brain, there are others he cannot—ones he will never.

He cannot run the base paths without an awkward gallop. He cannot field a grounder with two hands; his left hangs close to his body like an injured dog paw. He literally cannot find his way to first base with a map—William doesn’t possess the spatial thinking to navigate one. Once Tiernae asked him to draw a rainbow. He grabbed the crayons, bunched them in a kind of order, and drew a multicolored block.

William grasps his story through the broadest of strokes. “I had seizures when I was a baby,” he says, grabbing his head. “The doctor operated on my brain. Your brain is weird. This half controls that half. That half controls this half. Left side. Right side.” He runs his good hand through his closely cropped hair on both sides for emphasis, brushing over a visible scar where no hair grows. “No, this is my left and this is my right.”

Limitations may hinder the boy, but they don’t concern him. One of the unintended benefits of the surgery finds William with little depression and no anxieties or self-judgment. He’s simply looking forward to jumping into the community pool in their Zionsville neighborhood after the game.

But those shortcomings do bother Jeff, as they serve as a constant reminder of that awful decision he and Tiernae made eight years ago. Sometimes, Jeff says, his heart breaks when William asks why his hand doesn’t work like his friends’ hands or why he can’t see as well as others do (his peripheral vision is so poor he can’t make out all of the food on his plate). “One day I might be able to say this was a really good thing for our family,” says Jeff, noting that it brought them closer together and to God. “I’ll never say it was a good thing for William, though. Never.”

Tiernae, too, suffers pangs of dismay. “Having a special-needs child is like dealing with the death of a child—the child you thought you were going to have. There’s a grieving process, but I see so many other parents get stuck in the denial phase. Accepting William’s situation for what it is has allowed me to see so much goodness. Having him has led me to live a bigger life.”

For William, living to the fullest comes with the narrowest comprehension of what his parents’ decision means. He knows doctors took a part of his brain to save him, but he will remain blissfully unaware of the hole it left in his parents’ heart.

Tiernae and Jeff bear the consequence—sometimes a burden, always a blessing.

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